Championing Patient Access For Canadians With Rare Diseases

Doctors repeatedly told Simon Ibell’s parents that their son, despite appearing active and happy, would not live to see his tenth birthday. That was more than 30 years ago, but for Simon and his family, those three decades have been hard won, fighting for access to health care in a system that often fails those with rare diseases. Simon is one of just two thousand worldwide with MPS II, also known as Hunter syndrome.

Hunter syndrome has shortened Simon’s stature, caused his organs to swell to more than double their natural size, and caused his joints to stiffen and his lungs to weaken. But it hasn’t killed him. Sometimes it seems like it hasn’t even slowed him down. After earning a degree in Sports

Administration at the University of Victoria, Simon worked as a business consultant and in athlete relations before launching his own charity, the iBellieve Foundation, for which he crusades tirelessly for those with Hunter syndrome and other rare diseases. “I’ve been inspired, like many Canadians, by the life of Terry Fox,” Ibell says.

“I feel proud of all Simon has done in this area and want to support him and all those affected by patient access issues.”

Though there are only 30 Canadians suffering from Hunter syndrome, when you look at rare diseases as a whole, 1 in 12 Canadians are affected. And for those millions of Canadians, gaining access to the treatment they need can be extremely difficult. “We’re the only country in the developed world that doesn’t have a proper federal rare disease framework,” says Ibell.

In order to get treatment, Simon spent a year and a half commuting weekly from Toronto to North Carolina for infusions as part of a clinical trial. When the trial ended, it took a substantial media campaign and some help from his childhood friend, two-time NBA MVP Steve Nash, for Simon to convince Ontario to fund the drug. “I’m really just a supporter of Simon and the tireless work he’s done for rare diseases,” says Nash. “Obviously learning more about the plight of patient access for rare diseases was heartbreaking and I’m thrilled to lend my voice where I can.

The victory was a major one for Simon but, under our current system, it’s a fight that needs to be refought in every province for every rare disease. If Simon wanted to return to British Columbia, he would be faced with the reality that doing so would mean losing access to the medicine that keeps him breathing. “We shouldn’t be prisoners in our own country,” he says. “But right now, if you are a rare disease patient, you are.”

Fortunately, thanks to tireless champions like Simon, and compassionate allies like his friend Steve, the fight for national access to treatment looks every day more winnable. “I’m happy to help where I can,” says Nash. “I feel proud of all Simon has done in this area and want to support him and all those affected by patient access issues.”

For Simon, the endgame is a federal framework for rare diseases, with buy-in from all provinces and territories, as well as the private sector and insurers. “It’s a human rights issue, really,” says Ibell. “When we have something available to help people and improve their quality of life, it should be a given right to have access to that.”

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